I haven’t posted in a week or so! Because there was something that happened last week that had me stopped in my tracks.
We went for a follow up appointment from some extensive investigations that happened in September during a two week admission in Bristol Childrens Hospital which involved every system in Ambers body, ie neurological, gastrointestinal, respiratory, cardiac, and dietary!. There was nothing that could have prepared me for what happened next! I thought I knew everything about Amber’s health problems, and although I requested a cardiac work-up, I left the appointment in a daze of shock and disappointment. When we arrived at the clinic Amber was given an ECG and an Echocardiogram, an Echo is a procedure that looks at the structure of the heart, the blood flow, the thickness of the muscles etc using ultrasound technology. I already knew that Amber had a small anomaly that I was told about by a nurse when she was two but was told that a lot of the population live with it, and that unless she was going to be a deep sea diver, which she wasn’t, then there was nothing to worry about. Except what I was told last week, is that in fact, she has a hole in her heart, and not what was originally thought. Amber also has an anomaly in the beating of her precious heart, and at times her heart beats extremely fast called tachycardia. We are lucky enough to have a great cardiac consultant that listened intently to the clinical history given by me about Amber, and was also interested in genetics and cardiovascular problems. He was pumped! Excuse the pun….. to ensure that he gets to the bottom of her problems.
Although I asked for the referral and testing it came as a shock that we were adding Congenital Heart Defect to her list of conditions. It felt strange that no longer was I liaising with Epilepsy Nurse specialists, but was also being given information about the British Heart Foundation from a Cardiac Nurse Practitioner. What makes me angry, however, is that earlier this year, when these cardiac symptoms were at their worst I was seen as slightly neurotic by the local health team at our regional hospital. I am desensitised to her extreme seizures, as I have said in a previous post, but when you walk into your child’s bedroom, in the middle of the night to check on some weird noise that she has made, and you peak through her bed sides, to see that she is staring at you, eyes wide, and not moving, and you fear the worst………. The shock is horrendous, and you look intently, stopped in your tracks, till you see her breath. In July Amber was admitted to the local hospital for 36 hours of cardiac monitoring, following some of these uneasy events, but the monitoring was not followed up, nor was it reported on, in fact it was lost in the ether of wireless cardiac monitoring in our local hospital. I remember at the time telling the doctor, that if I didn’t follow it up and god forbid she died from a cardiac event and I hadn’t investigated it I would have never forgiven myself, as strong as I am, I would have felt I failed her. But they failed me as a parent, and Amber as a complex child, I feel they humoured me and didnt treat me or my daughter with the basic level of care that should be expected.
Thankfully, again, I have been given the respect, as a parent expert in my child from our specialist centre. She is now under the radar of cardiac services, and even if there is nothing that can be done, she will be continued to be monitored probably for the remainder of her life. We now know that if she ever has to have an operation she will need anti-biotics prior to prevent Endocarditis, a rare but serious bacterial infection of the lining of the heart.
Today I received an email from the Neurologist, saying simply “Amber keeps teaching us all the time!” Amber certainly does, she has taught me to listen to my senses, listen to my intuition, and to never give up. She teaches the medical profession to look outside the box, for those that are able, which isn’t always easy! She certainly does have a precious heart, even more so now than ever before.